Saturday, January 30, 2010

Evan Puzzle Piece # 1 - Creatine issues

As I mentioned in my prior post, hard copy medical records are incredibly important.  I've taken Evan's lab results to date and put them in a spreadsheet to track, with the out of range values highlighted.  There are some very interesting things going on.  I'm trying to track down more recent labs and get an updated set to see if I can get some more up to date numbers.  One thing in particular that interests me is his creatinine levels.  Note that they're always low.  Creatinine is a break-down product of creatine phosphate in muscle, and is usually produced at a fairly constant rate by the body (depending on muscle mass).  Evan has always had hypotonia (poor muscle tone) and this would be consistent with that problem.  Another thing to consider is the fact that creatine is fuel for the muscles AND the brain. 

A test that was performed at Chapel Hill in 2006 showed that Evan had a Guanidinoacetate level of 159.53, which is quite high considering the acceptable range is between 10-100. Guanidinoacetate is a Creatine transport chemical.  An excess of this indicates a malfunction, meaning that not enough Creatine is getting to Evan's muscles and brain. Evan's Creatinine levels have been around 0.4 and 0.3 with .05 being the lower acceptable level. 

As soon as I get updated labs to know what my starting figures are, I am going to try to supplement Evan with creatine.  Bodybuilders do it to build muscle, so obviously this is harmless and is certainly is worth a shot.


  1. Have you brought this up to his doctors? Strike that, dumb question. What an incredible examination of the information. I think you might be on to something...

  2. Yeah I've brought it up. I was blown off too. I was told basically that it wasn't that far below normal. But my goodness, you can't go much lower as it is! Which is why I'm going to Duke genetics and also which is why I am trying to see if I can do something on my own.

    I found that creatine deficiencies and creatine transport issues are a leading cause of mental handicap. I don't understand why no one else has thought to do this if it's so prevalent. I've looked everywhere online and don't see any discussion on it.

    You're going to be seeing it here though!